Page 1 of 3 123 LastLast
Results 1 to 10 of 30

Thread: Its 2009, stop calling facial flushing and burning rosacea!

  1. #1
    Junior Member
    Join Date
    Jun 2009
    Posts
    2

    Default Its 2009, stop calling facial flushing and burning rosacea!

    The vast majority (90%) of the medical community believes that ROSACEA is superficial redness and/or bumps (subtype II).

    They are not even aware that some people experiance dibilitating facial PAIN CAUSED FROM DAMAGED FACIAL BLOOD VESSELS: facial flushing (intense heat sensations that can last hours, days, years that no fan, cool shower, 20 degree weather, or anything else will stop the heat sensations) as well as the burning sensations that turn permanent. We are never going to get any drug that is going to help with the facial flushing and burning untill we call it what it is: FACIAL FLUSHING AND BURNING FROM DAMAGED AND ABNORMALLY SENSITIVE FACIAL BLOOD VESSELS.

    Stop using the term rosacea unless you only have facial redness and/or bumps. The medical community thinks that all you have to do is use metrogel and then you are clear of rosacea.

    Why doesn't everyone with flushing and burning create a new forum called "the facial flushing and burning forum"

  2. #2
    Moderator phlika29's Avatar
    Join Date
    Apr 2006
    Location
    Dorset, UK
    Posts
    8,371

    Default

    I am not sure what makes you think that 90% of the medical establishment thinks that flushing is not involved in rosacea. All of the literature that is available to doctors that I have seen discusses flushing. I think part of the problem lays in the fact that those that dont get success with metrogel,etc just dont bother to go back to their docotors. They turn to alternative information sources such as us. I do agree that alot more education about treatment is required.

    As for the suggestion about starting another from entitled flushing and blushing forum well that just seems a little pointless. There are already forums such as esfb that are dedicated to blushing,etc. The name rosacea helps to distinguish it from other conditions such as the menopausal flushing. Ofcourse as a forum moderator I would be slightly biased to this forum

  3. #3
    Senior Member
    Join Date
    Jun 2005
    Posts
    119

    Default Its 2009, stop calling facial flushing and burning rosacea!

    I don't call it rosacea! I usually call it erythromelalgia. Go to www.erythromelalgia.org for more information.

    My doctors also acknowledge that what I have is not actually rosacea. They call it an autonomic nervous sytem dysfunction. It has also been called vasomotor instability.

    I really don't care what it's called, I just wish there was a treatment that worked. I take several medications and they all help a little, but none of them stop the intense severe burning pain.

    Many years ago, I did host a yahoo group for burning faces, but had to shut it down because a crazy poster kept joining the group and posting inappropriate things. It became too much of a chore. There are 2 yahoogroups for EM. I think the EMers can relate more to me because they all have the burning pain and many do suffer facial symptoms, and some are face (and ears) only, like me.

    I read the rosacea sites because I think the treatments may overlap. And also, I try to help others who post here about flushing and burning.

    Best regards,
    Meg

  4. #4
    Senior Member
    Join Date
    Oct 2005
    Posts
    429

    Default

    Meg, what meds do you take that help, please?

    Thanks.

  5. #5
    Senior Member
    Join Date
    Jun 2005
    Posts
    119

    Default

    Hi Wrinkled Clue,

    Email me directly at meg.edelson@prodigy.net and I would be happy to share the medications and treatments I am currently taking/doing that have helped reduced my flushing and pain. I should say that I am not symptom free by any means.

    I prefer not to post all my meds on a public forum, but I do want to help anyone else who is suffering from this excrutiating pain. This offer is open to anyone who is suffering from severe flushing with burning pain.

    Meg

  6. #6
    Senior Member Brady Barrows's Avatar
    Join Date
    Jun 2005
    Location
    Honolulu, HI, USA
    Posts
    4,704

    Default EM

    Quote Originally Posted by meg View Post
    I don't call it rosacea! I usually call it erythromelalgia. Go to www.erythromelalgia.org for more information.

    My doctors also acknowledge that what I have is not actually rosacea. They call it an autonomic nervous sytem dysfunction. It has also been called vasomotor instability.

    I really don't care what it's called, I just wish there was a treatment that worked. I take several medications and they all help a little, but none of them stop the intense severe burning pain.

    Many years ago, I did host a yahoo group for burning faces, but had to shut it down because a crazy poster kept joining the group and posting inappropriate things. It became too much of a chore. There are 2 yahoogroups for EM. I think the EMers can relate more to me because they all have the burning pain and many do suffer facial symptoms, and some are face (and ears) only, like me.

    I read the rosacea sites because I think the treatments may overlap. And also, I try to help others who post here about flushing and burning.

    Best regards,
    Meg
    Aloha Meg,

    On the www.erythromelalgia.org site this is what it says Erythromelalgia (EM) is:

    "EM is a rare disorder that can occur at any age and affects both genders.
    Most cases of EM are idiopathic (cause unknown). Sometimes EM is secondary to other medical conditions including autoimmune, neurologic or blood disorders. Lupus, polycythemia vera and multiple sclerosis are examples.
    EM also can mimic other illnesses such as Complex Regional Pain Syndrome.
    Infrequently EM may develop following an injury or surgical procedure.
    Some people have the inherited or primary form of EM and usually have other family members with the disease. Recently, an EM gene was identified as were several mutations to this gene. Apparently each affected family carries a different mutation.
    Both the blood vessels and the nervous system are usually involved in EM.
    The name erythromelalgia describes the clinical features: erythros (redness), melos (extremity), and algia (pain). There are other ways to spell EM including erythermalgia, which emphasizes heat (thermos).
    Remissions are possible, but infrequent. With the help of the members of The Erythromelalgia Association (TEA), their doctors, and future research, control of EM symptoms is entirely feasible.

    Symptoms
    If you have been diagnosed with EM, symptoms may include hands or feet that are very red to purple in color, are perhaps swollen, hot to the touch, and have burning pain.
    Location
    For some, EM symptoms may appear in the face, ears, knees or other parts of the body. The intensity of the symptoms varies from person to person. Some notice a continual burning pain while others are troubled with "flare-ups" or episodes lasting from minutes to days in length.
    Triggers
    Warm temperatures seem to be the most frequent trigger for EM episodes. Flare-ups are provoked by heat and exercise, and symptoms are relieved by cooling and elevating the affected extremities. Some TEA members have found that foods, spices like MSG, beverages (particularly alcohol) and some drugs can make EM symptoms worse."
    Source

    While EM sometimes effects the face and looks like rosacea, it is a different diagnosis than rosacea. I have never heard of any literature linking EM with rosacea. I carefully looked for any reference to rosacea on the TEA site but could not find any, so if they do even mention rosacea on the TEA site, it is not a good idea to promote such an idea. The flushing and burning associated with rosacea doesn't necessarily mean one has EM. I think confusing rosacea with EM might not be wise. One should get a diagnosis to differentiate rosacea from EM or vice versa. I suppose one could have a dual diagnosis of EM and rosacea but this certainly hasn't been discussed by other rosaceans in this or any forum.
    Last edited by Brady Barrows; 30th June 2009 at 03:06 AM.
    Brady Barrows
    Join the RRDi

  7. #7
    Senior Member Brady Barrows's Avatar
    Join Date
    Jun 2005
    Location
    Honolulu, HI, USA
    Posts
    4,704

    Default Esfb

    Quote Originally Posted by research19 View Post
    The vast majority (90%) of the medical community believes that ROSACEA is superficial redness and/or bumps (subtype II).

    They are not even aware that some people experiance dibilitating facial PAIN CAUSED FROM DAMAGED FACIAL BLOOD VESSELS: facial flushing (intense heat sensations that can last hours, days, years that no fan, cool shower, 20 degree weather, or anything else will stop the heat sensations) as well as the burning sensations that turn permanent. We are never going to get any drug that is going to help with the facial flushing and burning untill we call it what it is: FACIAL FLUSHING AND BURNING FROM DAMAGED AND ABNORMALLY SENSITIVE FACIAL BLOOD VESSELS.

    Stop using the term rosacea unless you only have facial redness and/or bumps. The medical community thinks that all you have to do is use metrogel and then you are clear of rosacea.

    Why doesn't everyone with flushing and burning create a new forum called "the facial flushing and burning forum"
    While flushing is usually associated with rosacea, there are some rosaceans who report no flushing and have rosacea. There is a forum dedicated to flushing/blushing:
    ESFB Channel
    Brady Barrows
    Join the RRDi

  8. #8
    Senior Member
    Join Date
    Jun 2005
    Posts
    119

    Default

    Quote Originally Posted by Brady Barrows View Post
    Aloha Meg,


    While EM sometimes effects the face and looks like rosacea, it is a different diagnosis than rosacea. I have never heard of any literature linking EM with rosacea. I carefully looked for any reference to rosacea on the TEA site but could not find any, so if they do even mention rosacea on the TEA site, it is not a good idea to promote such an idea. The flushing and burning associated with rosacea doesn't necessarily mean one has EM. I think confusing rosacea with EM might not be wise. One should get a diagnosis to differentiate rosacea from EM or vice versa. I suppose one could have a dual diagnosis of EM and rosacea but this certainly hasn't been discussed by other rosaceans in this or any forum.
    Hi Brady,

    I am not saying that rosacea is linked to erythromelalgia (EM). I am saying that people who suffer from severe flushing with red, hot, burning pain, are more likely to EM than rosacea. It's a type of autonomic nervous system dysfunction that is often misdiagnosed as rosacea. That's what happened to me, until I got properly tested at The Mayo clinic in Rochester, MN. With that said, many of the folks who suffer from hand and foot EM also suffer facial symptoms. Some may have facial EM, but others may just have rosacea. TEA does not mention rosacea on their site because the site is all about EM. I don't think EM is discussed on the rosacea boards because it is actually a rare disease that few people are aware of. However, anyone who suffers from red hot burning pain on any part of the body, including their face an ears, may very well have EM. There are plenty of folks on the rosacea boards who suffer from flushing with red, hot, burning pain, with no other typical rosacea symptoms and who do not respond to the standard rosacea txs. Those are the folks who might actually have EM or a similar type of autonomic nervous system dysfunction.

    Meg

    Meg

  9. #9
    Senior Member mattdog323's Avatar
    Join Date
    Feb 2009
    Location
    auckland
    Posts
    582

    Default

    Quote Originally Posted by research19 View Post
    The vast majority (90%) of the medical community believes that ROSACEA is superficial redness and/or bumps (subtype II).

    They are not even aware that some people experiance dibilitating facial PAIN CAUSED FROM DAMAGED FACIAL BLOOD VESSELS: facial flushing (intense heat sensations that can last hours, days, years that no fan, cool shower, 20 degree weather, or anything else will stop the heat sensations) as well as the burning sensations that turn permanent. We are never going to get any drug that is going to help with the facial flushing and burning untill we call it what it is: FACIAL FLUSHING AND BURNING FROM DAMAGED AND ABNORMALLY SENSITIVE FACIAL BLOOD VESSELS.

    Stop using the term rosacea unless you only have facial redness and/or bumps. The medical community thinks that all you have to do is use metrogel and then you are clear of rosacea.

    Why doesn't everyone with flushing and burning create a new forum called "the facial flushing and burning forum"

    THE UNDERLYING DISSORDER OF ROSACEA IS damaged blood vessels,

    I dont under stand your mentality,Lasers only treat the blood vessels,

    Do u have Rosacea?Kprf?

    Whats your back ground info?

    The whole 90 percent thing is totally wrong i think you are reading to much nonsense bud,And sounds like u need to chill OUT!lol




  10. #10
    Senior Member
    Join Date
    Mar 2008
    Location
    UK
    Posts
    110

    Default

    Quote Originally Posted by research19 View Post
    The vast majority (90%) of the medical community believes that ROSACEA is superficial redness and/or bumps (subtype II).
    Rosacea to me is "acne rosacea". All the GPs at my clinic still use the term "acne rosacea" except for one Indian GP who calls it "acne rosa". Everyone who cannot identify with the symptoms of acne rosacea really has some other disease.

    I think the new subtype naming convention has blended multiple diseases all under the umbrella term of "rosacea".

    I have never flushed, so I do not want to be categorized with flushing. I do not get telangiectasia. I do not identify with rosacea being a vascular disease or anything to do with blood vessels. It is all about the bumps. The bumps cause the redness. Redness does not exist without the bumps. Any burning sensation requires both bumps and redness.

    I think the top poster has a valid point, the facial-flushing-and-burning-without-bumps disease should be renamed to something else.

Similar Threads

  1. Replies: 6
    Last Post: 2nd February 2013, 02:28 AM
  2. Facial sensitivity - stop rosacea?
    By baby11 in forum General rosacea questions
    Replies: 3
    Last Post: 19th May 2011, 01:30 AM
  3. Replies: 0
    Last Post: 24th May 2010, 01:10 PM
  4. Facial flushing and burning
    By LeeMac in forum General rosacea questions
    Replies: 4
    Last Post: 13th February 2007, 12:00 PM
  5. Facial Flushing & Burning -- Acid Reflux Disorder?
    By drnase in forum General rosacea questions
    Replies: 4
    Last Post: 16th October 2005, 10:51 AM

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •